#BeforeTheyForgetWhoWeAre

I wrote this pre garden visits but the message is still the same, imagining how mum is feeling just now.

It’s a long read but there is alot to say...

4 signatures away from 200 - link in comments.

�Hi my name is Anne and I would like to share my experience of living with Dementia in a care home during the Coronavirus pandemic and lockdown.

I am 62 and have been living in a care home for just over two years now. It is hard not living with my husband anymore, I miss him dearly as I know he does me. The choice to live apart was not ours but we were told it was the only way I could continue to get the care I needed as my Dementia progressed. Knowing all this we embraced the new norm and my husband and family helped me settle into my new home.

My husband would visit everyday along with other family and friends spread throughout the week, it was great. You see I thrive from these visits as my dementia has stolen my ability to communicate via speech or written form, what I rely on most is physical visits where I get cuddles and I recognise voices, faces and smells of those who come to say hi. I love it and look forward to seeing who will visit each day.

A few months ago the visits stopped and because of the way the dementia has developed I am unable to process why this is - but of course you all know it is due to Covid-19 and it is in my best interest to keep me safe and everyone else who I have come to create a new home with.

This doesn't make it easy as I miss the familiar faces who would bring a smile to my day. You see outwith these visits there really is no way for me to keep regular contact with my family in this modern day and age, can you believe it? All this technology and no-one knows how to incorporate this into my daily routine so my family can see a picture of me and know how I am doing.They need to rely on phone calls and at time these phone calls can minutes even seconds long as the staff are so busy making sure we are all OK. Meanwhile I am still wondering why no-one is visiting.

I do wish someone would think how we can incorporate technology to allow my family to know how I am and let them know if I need anything. I would love for them to know what I have been up to and drop hints that I need more of my favourite chocolates.

I hear Covid-19 has effected so many people in so many ways. It saddens me to think that it has effected my family in terms of making difficult decisions when it comes to my care if I were to fall ill with Covid-19.

One phone call they received was to make the decision whether or not I would be taken to hospital if I was unfortunate enough to catch Covid-19. My family had to listen to what could happen if I were taken to hospital and decide what may be best for me and if a DNACPR should be placed.

Why did my family have to go through this along with all my other friends in the care home but families who don't have a relative in a care home didn't have to go through this ordeal?

Is my life not worth fighting for? Am I less valuable to society? Whatever your belief to that my family find me very valuable and want me around as long as possible.

Anyway - what is the point of making a family decide on a DNACPR or CPR - I heard this can get overruled anyway?

Covid-19 finally made it's way into my home, the care home. I so desperately wanted my family to know, unfortunately as I have said my communication skills are no longer there so I rely on the care provider to communicate with my family, sadly they found out through local press.

Can I ask why I was an oversight? I so desperately wanted my family to know that, and I was failed. I am supposed to protect my children and it angers me they had to find out this way.

I then became ill with Covid-19.

This was a scary time as I was confined to my bed a lot and anyone who came in to see me looked like something from a sci-fi film, now you know this is to protect me and everyone else but I found it a little scary and again not having my husband to comfort me was really hard.

Covid-19 really took it's toll on me. I became really ill once that an ambulance was called, they said I was so ill that If i was taken to hospital there wasn't anything they could do for me so was advised to stay in the care home and I could use the "just in case box" if needed.

This was hard for the staff who have come to know me and care for me over the past few years knowing that there was nothing else they could do as it was out of their hands, THEN they had to call my family and pass on the news.

I know they all cried a lot, even then I was not allowed to see my husband when they have been told to prepare for goodbyes - but me being me I pulled through.

We had a week of looking like I was making a turn for the better, but then I took a turn for the worse. This time I was taken to hospital and once again my family were told to prepare for their goodbyes, as I was really ill with Covid-19 pneumonia.

What was so different this time round to the first time an ambulance was called for me? Who is making these decisions on who gets hospital treatment and who doesn't?

The hospital were amazing and moved me to a room on my own and told my family that when the time was right they would be allowed to come and say goodbye, thankfully that never had to happen and the care I was given allowed me to pull through and return to home - which happens to be a care home.

When I left the hospital there was no familiar face to welcome me and go on the journey home with me, my family weren't even aware of my actual discharge until the care home called to confirm I was home. I sometimes wonder how it must have felt to see family from a distance there and then knowing I had overcome such a scary moment win my life alone.

Now I am home and overcome this awful disease that is changing the world we live in. All I want is even to see a familiar family or friendly face but you see as my room is on the second floor I can't even get a window visit - how is that fair? Infact I can't even go into the garden of what is meant to be my home.

I know that my family have been able to see me through video calls , which is great for them to see me but again my dementia has effected me in such a way that I cannot focus on such a small screen. At times this even confuses me more - I can hear the familiar voices but I cannot understand where they are coming from.

I hope for the day where technology will be used in a way to allow people like myself to keep in touch with family and a better way. Surely my emotional well being is important also?

I can't keep up with the news but i believe social distancing was relaxed to allow families to visit in gardens, how exciting?

Oh wait - that doesn't apply to me either? But i thought this was my home? Why can't my family visit me in my garden in a safe manner but families who do not have someone in a care home can?

I am maybe rambling a bit here now but I think what I am trying to say is that I understand I am in a care home and we are more vulnerable, but dementia is not on the shielding list, if i was fortunate enough to be still in the family home with living my dementia my life would be so different during lockdown.

I feel that I have been neglected a little as well as my family due to being in a care home. No-one is asking for a family reunion in my room but i would want someone somewhere to recognise my vulnerability and the need to see my family at the same time as the rest of the country in a safe manner.

I recently managed a window visit with my family as measures relax in care homes, I cried and reached out. I recognised these people as faces who bring me joy and comfort - there is the ongoing quandary if i really know who they are but what I do know is they made me cry just by seeing them which means i have been longing to see them for all these months.

I will leave you on that note and hope you can see where I am coming from and long to be treated the same as the rest of society and see how we can make reasonable adjustments to allow us to live a life where our families are involved as much as possible.

Remember, I was told that the care home would be my new home it saddens me to think that this is no longer accurate and has been the reason why I have been so isolated despite being surrounded by the many wonderful carers who do ana amazing job on the ground.

I can't wait for my socially distant visit with my family in the garden but i am left wondering if and when it will happen.�